With NMOSD, my to-do lists now include staying well, as well as staying busy
I’m learning to rewrite my lists to make room for the reality of my disease
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I’ve been a list builder for as long as I can remember. Even as a kid, I found comfort in writing things down, mapping out what needed to be done, and crossing items off one by one.
Lists gave me structure. They still do. I like to stay busy, not because I fear stillness, but because productivity feels like progress. It’s part of my type A personality, the part of me that thrives on momentum and purpose.
Staying busy has also become a coping mechanism. Living with neuromyelitis optica spectrum disorder (NMOSD) is unpredictable, and when my body feels unreliable, my mind looks for control wherever it can find it. Filling my days with tasks, commitments, and goals distracts me from the realities of the disease. It keeps me focused forward instead of inward.
But there’s a question I don’t always want to ask myself: Do I sometimes take on too much?
When my to-do list doesn’t get completed, guilt creeps in. I replay the day, measuring what I accomplished against what I planned, and too often fall short in my own eyes. That guilt can be heavy, especially when I’m already carrying the invisible weight of a chronic illness.
Even though I’m taking antidepressants, I still struggle with motivation. Some days, it feels like pushing through wet cement just to start. And that’s when the internal debate begins: Is this a lack of motivation, or is it exhaustion caused by NMOSD?
A new version of motivation
Motivation is something we often talk about as a mindset problem, a willpower issue. But when you live with a disease that drains your energy at a cellular level, motivation isn’t always the real obstacle. The things I need motivation for aren’t optional extras, they’re fundamental parts of life: work, exercise, caring for my family, or simply getting through the day. These aren’t luxuries I can put on hold until I “feel better.”
Some patients use the spoon theory as a way to express the finite amount of energy they have every day. But knowing the spoon theory and living by it are two very different things. Long before NMOSD entered my life, I held myself to a higher expectation, so I feel as if I must do more than the spoon theory suggests. I know this isn’t being kind to myself, but the standard I hold myself to doesn’t just disappear because I was diagnosed with NMOSD.
Part of this high standard comes from a deep refusal to be a victim. I never want NMOSD to define me. I never want to use it as an excuse for my performance or my ambition. I want to be reliable, capable, and strong, just as I was before. But there’s a fine line between resilience and self-punishment, and I’m learning that crossing it too often doesn’t make me stronger. It just makes me tired.
And because of that, I’m also learning that exhaustion doesn’t mean failure. Rest doesn’t mean weakness. Adjusting expectations doesn’t mean giving up. It means adapting. It means recognizing that strength can look different now, and that different doesn’t mean less.
I’m learning to rewrite my lists — not to abandon them, but to make room for reality. Some days, success is completing everything I planned. Other days, success is listening to my body and choosing what truly matters. Progress isn’t always measured by how much I do, but by how sustainably I live.
NMOSD may limit my energy, but it doesn’t limit my worth. And maybe the most powerful act of strength is allowing myself grace, knowing that I can be driven, disciplined, and determined, while also honoring the body that carries me forward. Staying busy will always be part of who I am. But staying well is becoming part of how I define success.
Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.
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